Re: 3rd recurrence of H&N cancer - treatment experience

Hi Leyla.

If you do a search on immunotherapy at the top of the page there are a few current threads.

There have been some remarkable results with it.

One of our forum members is being tried with immunotherapy and a therapeutic HPV vaccine which sounds promising.

I think you have to be guided by what the scans show and what the consultant says. there is no other way.

I'm afraid I don't know about Ozone therapy but Proton Beam is just a different type of radiotherapy and your uncle probably can't have RT twice in the same place.

I do hope you find the answers you need from your Uncle's team. It's such a horrid situation to be in.

Hi Dani,

Thank you very much for your reply. I will have a look at the current immunotherapy threads for more information. 

It’s hard not to lose hope at times, but we’ll try and keep the battle going.

Thanks again, I really appreciate it.

Leyla 

Leyla. Google Cemiplimab and ISA101b Vaccine

1. Hi there, so sorry for what your uncle has had to go through!! my mum has throat cancer & just had immunotherapy for around 9 months, to be honist we all felt like it was doing her good & she never had any major side effects just tiredness now & again but she always felt like that was due to lockdown & not being able to get out or really do anything. Her 2nd scan came back & the consultant said the tumer has got slightly bigger so the treatment isn’t working! We are heartbroken as we really thought she was doing great on it they said they can give her chemotherapy but the side effects will be really tough on her so we now don’t know weather she should risk being so sick as her health apart from the obvious is ok/ish. My advice would be stay on the immunotherapy as long as he can..we with they would have kept our mum on it longer as it’s supposed to work over a longer period of time but I know it’s really expensive for them & if they don’t see anything positive straight away the will take you off it.

hope his scan comes bk positive, we really thought this was the miracle we were hoping for as we have heard amazing things about it.

good luck with everything.

xxx

Hi Sky,

I am very sorry to hear of your situation too, it really is a very difficult place to be in and to know what the right thing to do is. Thank you for sharing your story and experience!

As my uncle has clinically deteriorated and he has had an eruption from his cheek which the consultant believes is his cancer, we are fearful that it has not been effective and the cancer is progressing. Like yourselves at the start we were very hopeful, especially after reading stories about how life changing it has been for some patients.

He has his 5th immunotherapy cycle this week and following this he will have further scans to decide whether to continue immunotherapy treatment. We are holding our fingers crossed we get some positive news from the consultant.

I can only imagine how heartbroken you must have been to hear they didn't think it was working in your mum's case. Palliative chemotherapy is our next option. Previously, before immunotherapy was ruled in as an option chemotherapy was discussed including a combination of drugs - Carboplatin, 5-fluorouracil & Cetixumab. We are concerned that if the immunotherapy is not working, the cancer is progressing and he is getting weaker if he will be fit enough to be given chemotherapy should he decide he would like further treatment.

I think mentally it has been very tough on him, and he is slowly losing his will to fight. We are in a similar dilemma wondering if chemotherapy would be the best next step if it came to it due to the potential side effects. We want him to have as best a quality of life as possible so will help give him all the information but ultimately will respect any decisions he makes regarding whether to continue treatment or not.

Thank you for your well wishes. I wish your mum and your family all the best in navigating the cancer journey too. It's such an emotionally difficult time for all and my heart goes out to you that unfortunately like us you also found your self in a similar predicament.

Leyla